Down syndrome: Why I don't want my child to hug everyone

Maureen used to be obsessed with baseball -- and then she had children. After she welcomed her son, Charlie, and his extra chromosome, she discovered her passion for writing about Down syndrome and disability-related issues.

All about respect and safety

I'll never forget the first time I thought, "My child will *never* do that." I was at our first Buddy Walk, which raises awareness of Down syndrome and funds for local services. A boy of about 8 years old, with Down syndrome, was racing from tent to tent, barging in and wreaking havoc. Each time he was admonished, he ran to the closest person and hugged them.

Photo credit: Kathryn Lariviere

The cute gesture seemed to negate his poor behavior, and he was allowed to continue. Now that my own son is 4 and is getting positive reinforcement for hugging everyone, I've realized my son, who was "never going to do that," is on the path to becoming a random hugger, too.

Am I overreacting?

"In our Massachusetts General Hospital Down Syndrome Program, all of our team members make a conscious effort to shake the hands of our patients with Down syndrome when we are meeting them for the first time," shares Dr. Brian Skotko, co-director, MGH Down Syndrome Program. "In doing so, we are trying to demonstrate appropriate social gestures for first encounters."

What's the big deal?

"Some parents might say, 'it's just a hug,'" Dr. Skotko says. "But your adorable child giving that warm embrace to a total stranger will one day grow up and become an adolescent in a hormone-charged world.

"Hugs from adolescents and adults can be misinterpreted and send wrong messages. So, I recommend that all parents start teaching appropriate social skills when their son or daughter is young. And, besides, your children will still be adorable, even with their handshakes."

So, it's bad to hug someone with Down syndrome?

"There is not a thing wrong with hugging a person with Down syndrome, provided that the relationship between the person with Down syndrome and the other hug participant is that of a very close nature, and both parties and family members are happy with that arrangement," explains Leslie Walker-Hirsch, IMED, FAAIDD, a social development and sexuality consultant who has worked with both children and adults with intellectual disabilities.

"Things go astray when the hugging is indiscriminate or when it is an obligation and one of the two is really not interested, but does not know how to refuse. It is the child’s ability to discriminate that becomes important and needs to be the lesson, not whether hugging is good or bad."

Walker-Hirsch says the first obstacle to overcome is society's penchant for teaching children "to be cooperative and compliant at the expense of their own autonomy and even safety, with assertiveness viewed as being disruptive or stubborn and willful."

Learning more

The CIRCLES ® Curriculum Series is a multimedia teaching tool to address the concepts of social boundaries along the parameters of Touch, Talk and Trust. This series of video and expressive materials was designed especially to address the unique learning styles of youth and adults with Down syndrome and other cognitive differences. Some school districts are successfully using these materials for students as young as kindergarten age, with and without ID.

Why single out someone with Down syndrome?

Of course, learning appropriate greetings benefits all children, not just those with Down syndrome. But in my four-year experience as mom to a child with Down syndrome, I've seen children with Down syndrome treated with kid gloves and encouraged to be loving and physically affectionate with everyone.

While this behavior occurs with neurotypical kids as well, the challenge is making sure children with intellectual disabilities grow up understanding appropriate touch. And let's face it, the sooner my son understands appropriate touch, the better chance we have of ensuring his safety, as children with disabilities are at risk of sexual abuse.

"Self advocates need to practice assertiveness in safe, loving environments so they can become confident in expressing preferences and respecting the preferences of others," Walker-Hirsch says. "Personal safety is an issue at all ages for people with Down syndrome."

The nuances of appropriate and inappropriate interaction present particularly muddy waters for someone with an intellectual disability.

"When a child with Down syndrome becomes adult and has more independence, the knowledge of the touch boundary becomes extremely important, because loving parental supervision will not be there at every moment," Walker-Hirsch points out.

"The risk of sexual abuse is increased without the tools of refusal and reporting. Sometimes, men with intellectual disabilities in particular who have not learned the skill of recognizing a range of differing relationships… can have their friendly hugging behaviors misinterpreted by onlookers as something more sinister than just inappropriate, leading to some serious charges."

Acceptance doesn't require a hug

Because my son is only 4 years old, I've found myself feeling comforted when people want to hug him and when he responds. It feels like I'm so worried about how he will be accepted as he gets older, that I yearn for all the demonstrative love outsiders can show. Obviously, that's not healthy for anyone.

"Everyone knows that his or her own child is the most adorable and loving individual ever to be born!" Walker-Hirsch says. "Acceptance of a child with Down syndrome by others can be shown in many ways. A hug by someone who does not have a family-approved close relationship is not one of them.

"As the child with DS grows older and grows up, the dependence on touch as an indicator of acceptance can lead to some difficult and even dangerous situations."

"I want him to be affectionate and hug people he knows," Lariviere says. "I am fine when people ask if they can hug him and when he asks if he can hug someone. However, I do not want him to run up and hug a stranger… For all we know, it could be a dangerous person."

Lariviere incorporated goals in her son's Individualized Education Plan (IEP) to focus on appropriate greeting. While this benefits him now, it's also another way to plan for his future.

"Our goal as parents is to look at [our son's] whole life — not just as a child. When he is in high school, I don't want students or teachers thinking his behavior is sexual harassment because he is hugging everyone. I don't want [my son] to look unprofessional in a job interview because he doesn't understand the correct way to formally greet people."

Lindsy's story

Lindsy, who asked that we use only her first name, has a 5-year-old son with Down syndrome. "[He] has been a hugger since as long as I can remember," she says. "He started walking at age two and once he was confident and stable enough, the ambush hug appeared."

The ambush hug is indiscriminate. "Anyone walking by or even an innocent bystander across the room would have this little bullet head their way and he would lock his arms around whatever he could reach. It happens so quickly, they have no time to prepare."

Lindsy and her husband began to really work on teaching their son appropriate greetings around age 4. Today, her son is 5, and the difference is his height. "He is taller, and often his face is implanted in inappropriate places."

"The ambush hug is always awkward," she shares. "People are often taken by surprise, [and while] most seem to enjoy it, occasionally you will see someone feeling highly uncomfortable.

"We usually tell [our son] to use his words and say, 'Hi.' He now will also shake hands and say a version of, 'Nice to meet you,' or give high-fives and fist bumps."

"He still needs constant reminder not to ambush hug," Lindsy says, "and sometimes you can see it creeping up from his toes and impulse just takes over."

Battling the "always happy" stigma

While not the top priority to teaching appropriate greeting, Lariviere points out that if our children learn that skill, their more appropriate behavior can help combat the stereotype that children with Down syndrome are "always so happy!"

"There is a stigma that children with Down syndrome are always happy and affectionate," Lariviere explains. "[My son] has the same range of emotions as all children, but a 9-year-old randomly hugging people walking through the mall can certainly perpetuate that myth."

A parent's wish

"I wish more people understood that this move from hugging everyone to doing what is considered more socially normal is part of typical development," Lariviere shares. "Kiddos with Down syndrome may need extra practice and modeling to do it, but it is not any different than what parents, schools and society teach all children."